Looking for Guest Bloggers Please!

Hi all, I am sharing this once again as I am still on the lookout for guest bloggers to share their chronic illness stories here on the blog with us, if you are interested all details in the post below! 🙂 Please share to those who may be interested, thank you all ❤

Irish Dysautonomia Awareness

guest-blogging

Hi folks,

I am still on the lookout for guest posters for this little bloggie, I would appreciate hearing back from anyone with or in contact with a chronic illness. Patients, Partners, Family, Friends, Carers, Therapists, Doctors, anyone who would like to take part. If you know of anyone who might like to, please share this with them, thank you!

It can be completely anonymous or open, whichever you prefer, please just follow the steps below to take part and I really look forward to hearing from you 🙂

Also, a very BIG Thank You to those who have submitted something already, I hugely appreciate the efforts, thank you 🙂

——— Wanna Be Part of Guest Blog Submissions?———-

All you have to do is tell us a little about yourself and write a blog post (Any Wordcount) in relation to your chronic illness, or how a relation/friend/patient with an illness affects…

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Sorry for the long Hiatus…

A Reblog of a quick update from my work/portfolio related blog! 🙂

Lette Moloney

It has been a long time since I posted in this wee blog of mine. I doubt this blog even has any readers anymore! A lot has happened in the last few years that has meant I have had to put Photography and Videography work and all work in general, on hold, Hence the hiatus here in the last couple of years.

In 2011 I was diagnosed with a medical condition called Postural Orthostatic Tachycardia Syndrome. Following that in 2012 I was diagnosed with Ehlers Danlos Syndrome and a host of secondary conditions. If you want to read about all that in finer detail I have been keeping a blog called Irish Dysautonomia Awareness where I have been blogging my medical journey since 2011 and you can read about my full diagnosis story here. It needs a little bit of an update which I will work on but it will…

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Friday Feelings with Irish Dysautonomia Awareness

This week I did a Friday Feelings Blog post for the lovely Evie over on The Zebra Mom, Give it a read and let us know if you relate at all! 🙂 Thanks again to Evie for having me! 🙂 Enjoy!

The Zebra Mom

Hey there, hi there, ho there!

This week I spoke to Lette from Irish Dysautonomia Awareness. Lette suffers from Hypermobile Ehlers Danlos Syndrome (hEDS) , Postural Orthostatic Tachycardia Syndrome (POTS) , Sphincter of Oddi Dysfunction (SOD), Neurogenic Bladder Dysfunction and Gut Dysmotility, to name but a few of her conditions. You can find Lette on Twitter, Facebook and Instagram.

Lette Lette and her baby, Boo.

Hi I’m Lette. When I’m am able for it I love to play retro video games, photography, drawing, craft, listen to music. I like to internet hop and watch shows like Game of Thrones, The Walking Dead, The Expanse and Black Sails with my wonderful husband and our little dog Boo.

So now we know a little about Lette, let’s have a read of her Friday Feelings entry.

giphy

“Dear Diary…

It’s another Friday, they have begun to all feel the same these days, days melting…

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Dear Minister Harris- aren’t you forgetting someone?

Thanks muchly to Evie Evans – The Zebra Mom, for writing this post directed at Minister Harris in relation to the new Medical cannabis bill. I agree with her wholeheartedly, this of course should be available to all chronic pain patients ❤

The Zebra Mom

In 2016 the Dáil has passed a bill to make cannabis available in Ireland for medicinal use, after the Government said it would not oppose the legislation. People Before Profit TD Gino Kenny, the bill seeks to legalise and regulate cannabis products, which are used for medical purposes. Mr Kenny said his bill intended to make cannabis available to those with chronic pain, epilepsy, cancer, MS, Fibromyalgia and, under a doctor’s recommendation, would help to alleviate symptoms of illness.

Minister for Health, Simon Harris said that although he has concerns about some elements of the bill, he will not oppose its progression to Committee Stage. Mr Harris asked the Health Products Regulatory Authority (HPRA) to advise him on the scientific and clinical value of cannabis as a medicine. He said he wants to receive that advice from the agency before progressing the legislation any further.

The Minister also indicated that amendments would have to…

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More than just a bowel motion….

LOL!! This gave me a giggle! 😀 Shared from the wonderful Dr. Liam Farrell’s Blog! 🙂 ❤

drliamfarrell

If a tree falls in the forest and no one is there to hear, does it make a sound? One of a doctor’s unwritten roles is just to be there, to be a witness, a witness to pain and suffering, to grief and loss, to moments of great joy and great sorrow, but most of all a witness to body fluids.

Mrs Keogh arrived in the surgery in what P G Wodehouse would have called a dignified procession of one. “What do you think of that, doctor?” she asked, burping open the Tupperware container.

There followed a long, contemplative, and unexpectedly companionable silence; a golden, serene moment, a time for pause and quiet reflection, a time to stop and smell the flowers in a world that rushes ever faster. As the air grew steamy around us I could see little motes of dust sparkling in a stray gleam of sunlight…

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Neurogenic Bladder Dysfunction

Yup, I have yet another diagnosis!
This time I have confirmed Neurogenic Bladder Dysfunction. Though I have had some of these problems in the past, I first started having acute symptoms and was admitted to hospital last December (2015) and it was later confirmed after a Urodynamics Test showed little to zero activity in my Bladder on the 15th of March this year.

My first symptom was Urinary Retention. I would get the feeling to go and then couldn’t, it was awkward and then went 3 whole days without going. Lets just say it got more than a little uncomfortable with pressure, Sharp pain, severe nausea and I probably should have went to the hospital with it sooner as it can be very dangerous not being able to pee!

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According to the Wiki:

Signs and symptoms:

Urinary retention is characterised by poor urinary stream with intermittent flow, straining, a sense of incomplete voiding, and hesitancy (a delay between trying to urinate and the flow actually beginning). As the bladder remains full, it may lead to incontinence, nocturia (need to urinate at night), and high frequency. Acute retention, causing complete anuria, is a medical emergency, as the bladder can stretch to an enormous size, and possibly tear if not dealt with quickly. If the bladder distends enough, it becomes painful. In such a case, there may be suprapubic constant, dull, pain. The increase in bladder pressure can also prevent urine from entering the ureters or even cause urine to pass back up the ureters and get into the kidneys, causing hydronephrosis, and possibly pyonephrosis, kidney failure, and sepsis. A person should go straight to an emergency department or A&E service as soon as possible if unable to urinate with a painfully full bladder. – Wikipedia/UrinaryRetention

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I rang my doc for advice and he told me to go straight to A&E, he explained that urinary retention is considered a medical emergency and that I should be seen straight away if I go in. So I got my things together and went  in not really knowing what to expect, but at this stage I was in dire pain and discomfort.

When I got to the A&E I was surprised to find that they did treat it as an emergency and took me straight in, catheterised me to relieve the discomfort (that felt amazing, eventually, though it took an hour or more for the discomfort to subside only a bit, but it was enough to get a bit of comfort!)

Lots of blood tests and scans later they decided to admit me for more tests and observation.
I was in hospital for over a week as they needed to flush my system with antibiotics and fluids as there was blood found in my urine and an infection in my bladder and kidneys. A urology nurse had to come to show and explain to me that I had the option of using the full time Foley Indwelling Cathater that they had me on in the hospital, which is pretty intrusive to be honest, or I could use these small intermittent catathers that almost look like little lipstick tubes or even tampons, but small enough to fit in a purse and look rather inconspicuous.  I can use these whenever I need them and I wont have anything attachment to me full time.

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According to the Wiki:

Advantages: 
People with neurogenic bladder disorders like spinal cord injury, spina bifida or multiple sclerosis, and non-neurogenic bladder disorders like obstruction due to prostate enlargement, urethral strictures or post-operative urinary retention, need to be continuously catheterised to empty their urinary bladders. But such continuous catheterisation can lead to problems like urinary tract infections (UTI), urethral strictures or male infertility. Intermittent catheterisation at regular intervals avoids such negative effects of continuous long term catheterisation, but maintaining a low bladder pressure throughout the day. – Wikipedia/IntermittantCathaterisation

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Near the end of my stay the Urology team came to me with a ‘gift’!!! 🙂

My bag of intermittent cathaters! I actually smiled when I saw it. It was actually a cute set up! it came in a lovely stripy bag with instructions, Cathaters, Alcohol Hand Sanitation Gel, Sanitation Wipes and A Mirror to help you see where to put the cathater… like you didn’t know where to put it like, come on folks! but its a handy Mirror! :p

IMG_4792 copy    IMG_4793

Once I got the knack of using them, and they tested my bladder to see how full it was after I went, to make sure I was voiding properly, and once that was all clear I could go home.

Over the next few months I needed to continue to use the intermittent cathaters daily and, despite a few small nicks here and there, I got very used to them.

I eventually was called for a Urodynamics Test on the 15th of March and after a dead performance from my bladder, they conformed Neurogenic Bladder Dysfunction.

It’s actually ok to deal with but people with this can be more prone to developing infections of the Urinary Tract, the Bladder and even can lead to kidney failure, so I am now being monitored to keep an eye on my kidney function and I need to come back in to do an updated urodynamics test and a kidney scan once every 6 months. Which I am very happy with considering the amount of medication I also take daily, I do worry about my kidneys and other organs being affected from long term use.

My next appointment for this test is in September and I will update you once I know about that 🙂

Chat soon, Lette (Fainting Goat!)